Navigating Parenting, Marriage and more with MS

The Long, Winding, and Sometimes Wobbly Road to Getting a MS Diagnosis

Multiple Sclerosis seems to be one of the diseases that are challenging to diagnose. It seems like unless you live in an area where they see it frequently you may never know what is wrong with you. I could be completely wrong on that but that has been my experience. I have lived in 3 states and have had weird health problems for certain since I was 13 but they started before then. It took me moving to Colorado and changing General Practitioners multiple times to finally get one who listened to me and figured it out.

I remember complaining constantly of being so tired, all. of. the. time. and they suggested sleep studies, and Thyroid checks. Sometimes I wish it was my Thyroid, good grief they checked it every three months, guess what, not my Thyroid. When I was finally diagnosed the first neurologist I saw said there were more than 20 active lesions. She did not want to keep counting at that point, on the plus side, no spinal tap for confirmation of MS, on the negative side, you actually only need 5 active lesions to get the diagnosis if all the other blood tests are negative for the other things it could be.

Something I have learned by asking questions (so many questions), reading books, science papers, online journals and MS websites from around the world is that no two people have the exact same experience. Then general symptoms are the same for most, the onset is typically with the eyes, mine was not, but in general there is a list of symptoms and when diagnosis finally comes you may have a handful of them to varying degrees. If you happen to have any other health issues, it gets a bit trickier.

Some of the symptoms seem to be contradiction of each other, like an over active and under active bladder, but some people have to go all the time and others have to go but can’t. It is all about the nerve damage and how your brain is and is not communicating with your different parts. A list of symptoms, most likely not all, is below.

I track mine on A5 size template I made that fits into a normal sized bullet journal. I keep it with me and take it to all of my appointments. It also has a list of all of my doctors, therapists, health places and medication with dosage, who prescribed it and what it is for. The nurses love it as I don’t have to try and remember everything and they can just look at it. Also, my doctors have been able to make some recommendations based on the frequency of symptoms and changing one med from twice a day to only once and at night reduced my headaches and migraines from every day to every few days or less depending on my stress level. Check out “My MS Resources” Page to find a link to my templates that you can edit for your personal needs.